A question for ladies only, (or guys too but this is emotionally really sensitive)

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Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 9/1/2011 1:01 AM (GMT -6)   
As you know my permanent ileostomy was made necessary by severe pelvic injuries I sustained in 2006 pelvic reconstructive surgery for internal prolapses I did not have. 7 procedures were done when I only really needed 2. Main gist was that my sigmoid colon was not prolapsing internally as had been misread in the preop scan, surgeons saw in surgery it was not redundant (per expert review) and defendant surgeons proceeded to remove it anyway, did it wrong (per expert review) and then did no f/u to complications thus leading me on my 13 month chase cross country for help. ANd I was lucky to get the help finally with the lysis of small bowel adhesions and the ileostomy as colon and rectum had been permanently damaged. For this I will always be grateful for as long as I live.

I did not consent to 7 procedures in the original 2006 surgery and obviously would not have as nobody would for benign issues. Despite having had a hysterectomy in 1995 I did not have a vaginal vault prolapse, did not have a bladder prolapse, and did not need both ovaries out (just right one for benign ovarian cyst.) All I really needed was internally prolapsed SMALL bowel pushed back up into pelvis and space closed through which it prolapsed and a rectocele fixed. All could have been done vaginally on case review.

I am lucky to be alive and as long as I stay free of adhesive reobstruction and all stays well with my ileostomy stoma I will be very lucky as I have been so far for 4 years. I have accepted being unable to eat many of the foods I used to like to eat and my nutrition is fine anyway. I am one who can't eat anything I want like many ostomates can but that is even OK with me. I have traveled extensively, have more planned, enjoy walking and ballroom dance.

BUT because of the vaginal lift and the bladder lift both of which I did not need, this created real issues vaginally to the point where penetration is simply impossible. I certainly realize that sex is at the bottom of the importance list when ones life is at stake and having my ileostomy continue to function is indeed the main thing. BUT I cannot help but feel cheated out of yet one more bodily function (ability to have sex) in addition to losing the use of my colon and rectum.

If I were just an ileostomate and did not have this other pelvic damage, sex would certainly still be possible. BUT my damages are beyond just having a bag.

What I am looking for are ideas on how to accept this additional loss that will never be able to be returned to me. Ideas on acceptance welcomed. Again, glad to be alive, but it seems like enough is enough with the losses (which on case review) proved all to be needless at the hands of my original doctors doing additional unneeded procedures for dollars most unconsented. I'm at the point of so what if I win the suit, my body is basically lost and my life will forever be somewhat at stake with the threat of reobstruction. Am just getting kind of tapped out on the acceptance thing. Rosemary

Regular Member

Date Joined Apr 2011
Total Posts : 463
   Posted 9/1/2011 2:10 AM (GMT -6)   

That was the first time I have read about your personal story & overcoming a lot. I am very sorry for the loss of such personal things & I do totally relate.

I had 7-kids & after the last one my insides began to continue to fall as the muscles were long gone & would never come back. My intestines fell into the pelvic region instead of being in the abdominal region. My Colon tore thru the Vaginal Wall & then the Colon attached & got stuck (too much scar tissue) with the Bladder. Then the Colon & Bladder fell out of my body completely thru the Vagina (even the the colon came out thru Vagina). I was like that for 6-months before finding a Doctor that would even take my case (2010). My insides were completely tore up & nothing where it should be. In (2004) I had Abdominal Hysterectomy with 1st-Bladder Lift & Rectocele. C-section & a week later ruptured appendix (almost died), then had a Positive C-Diff test which turned into Psuedomembraneous Colitis (where I was hospitalized a month trying to save my life). I currently have Pelvic & Bladder Trauma & Dysfunction & I too, cannot have intercourse with my husband of 23-years. I believe from all the destruction it caused & godly amounts of Mesh holding everything up caused my Large intestines to quit functioning. Had temp. Loop ileostomy May 2011, & I see my Surgeon in 2-weeks to discuss about making it permanent & removing the rectum (as I have a huge rectocele causing a lot of pain).

Sorry I didn't mean to write so much about me, but I thought it would help you just knowing that YOU ARE NOT ALONE. It sounds like we are walking a very similar path. If you ever want to chat about personal stuff & don't want it seen by everyone pleez feel free to email me. I would love to chat with you. Just click on "Serenitee" & it will take you to my profile where my email address is.

I was wondering if you have ever saw or thought about seeing someone to be able to share your personal story & how it affects your daily life? Such as, Counselor, Therapist, Psychiatrist? If you don't mind me asking are you married or in a relationship with someone? If so, can you talk about what you are deeply going thru? I think if you had a professional person to talk with & about anything & everything it really does help. I really hope that you email me...You are the first person that I have met that is going thru something similar to me & it would be nice to chat with you.

Your Healingwell Friend,

Veteran Member

Date Joined Dec 2010
Total Posts : 3332
   Posted 9/1/2011 8:14 AM (GMT -6)   
Rosemary, you have been through a lot. This is so hard.....

But here's my suggestion: change your definition of sex. I don't want to get too personal, and I don't know whether you have a partner, but you said penetration was impossible, which is not the same thing as saying that sex is impossible. Anything that feels good sexually is sex. So what you've lost is one kind of sex, but not all of sex -- just like you've lost some foods, but not all of eating. Explore other things that feel good or might feel good, maybe some you've never tried before....

Our culture is very strong on positing intercourse as the only kind of sex that counts, but sexuality is so much broader than that (and intercourse isn't what feels best for a whole lot of women who don't even have health issues).

Which is not to take away from what a huge loss this is...... and losses do need to be grieved.

My two cents.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Another UC wife
Veteran Member

Date Joined Jun 2007
Total Posts : 2111
   Posted 9/1/2011 9:19 AM (GMT -6)   
Well said blueglass...I would also pursue other alternatives as well that can still keep things intimate and pleasurable in another way.

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 9/1/2011 11:22 AM (GMT -6)   
Thanks all for responses that make total sense. I am seeing a Post Traumatic Stress Disorder counselor but we have not yet gotten to this subject. My mom just died so we are dealing with that and with my whole fear of readhering issue, like as in don't waste the time you've been given worrying about what may or may not happen and just be glad you have not readheered and it is now four years out from getting fixed up the best that could be done.

I do have a special male friend to be close to once in awhile, we live far apart geographically. He is fine with what I can, cannot do, or want to do or do not want to do. It is I who is all hung up about what I wrote about. I do think you are right that society conditions us to think we are all supposed to be able to have vaginal penetration and leap about like 25 year old divas. Lots of media hype, I do agree.

Thanks Serenitiee. I will email you. I did not know that clicking on a poster's name can show the email (if they provide it.) Thanks, our paths are similar, yet different. I think what really pisses me off is that I did not even have the condition that I was operated on for! Takes it all into a different more unfair realm, but it is as it is as my atty says and he is so right. I just have to really tap into that with whole-hearted acceptance and dwell on the positives that I was soooo lucky to find through my own endurance. But, So hard when others I know personally are whole, well, and all their gears are clicking. BUT, it is as it is.

Thanks all, love you all, Rosemary

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 9/1/2011 7:06 PM (GMT -6)   
i think its good that you are talking to someone, and even better that you have a supportive partner.
blueglass and anotherucwife are right, its not all about actual sex,there are lots of other things, and it can be just about being close at times. it's kind of hard to discuss it without being like graphic or anything.
i dont think you should feel like it should be the least of your concerns, anything that bothers you is an important concern. and if it affects your self image then its a concern. but that's not all that defines you as a person, which i know is hard to think of, when its something that you are worried about. but there are other people who are whole as you may say who have problems with that too, you aren't the only person and it doesn't make you less of a woman or anything like that. you have had a very hard time and you came through it amazingly well, you do all that traveling and really out there living life. lots of people would have just given up after all you have been through, but you didnt give up or let that control you and thats what defines you as a person!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 9/1/2011 7:09 PM (GMT -6)   
Thanks Summer. Rosemary
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